Challenging Experiences – Linda


Linda felt left out of a conversation with researchers during a large national meeting


The other thing – and I – like this is – I don’t know if you can even use this – it’s – at one of the big meetings, where everybody from around Canada was involved, so you had breakout groups. Large – I mean, there were a lot of people – it was one of the – yeah, the twice-yearly meetings. And I know they wanted to have patients in one of the separate group in order to draw certain information, but it meant the patients got to – had to miss the really interesting workshops breakout groups that the researchers and clinicians – and there was one in particular that – and I felt like I was sent to the patient room, in which there were patients that were there for one-off – just for that – they weren’t part of the project. They were just there for that meeting, and there was a lot of ranting about their cancer experience. And I was really angry. I was really upset. And I don’t feel that I contributed much to that, but it was – I know they had – it was part of their agenda that they wanted feedback from patients on a particular item. But it separated the patients, that’s what was that bothered me. It separated the patients from the rest of the meeting in the project, and put them separately in this box, it was – it felt to me. So again, I don’t know how that could be used. Those would be the only negative experiences that come to mind, and I don’t – I think, even if I thought about it more, there wouldn’t be anything. They’re very specific.

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